Tiring day helping Yee Ma Move & ANOTHER CCHS BABY IN CMC???

Mama helped Yee ma pack her house, apparently the people will start working on her house tomorrow.  I just hate moving because it reminded me of the time where I lost my precious jewelries?  Anyway... mama made sure to help Yee Ma before we left to see you in the hospital.

Your tummy again was a lot softer.... very nice.  34.5, I love that.... I told Yee Ma to measure SherLi's tummy, even though she's probably about 12 lbs now.... we want to see how big it is... it is 43... so, if you are about 10+lbs, 34.5 isn't that bad, what you think?

We got here and hmm... you were just not the best smelling baby around :P  Yes... after your trach change, your belly started giving us problem, so, you didn't even bath at all for over a week, so, mama asked Miss Nicole if we can bath you.  She was so nice.... yes... she LOVES you so much... she help mama clean you up and yes.... mama asked to help change your trach tie because mama wanted to make sure to learn ASAP so that we can head home ASAP.

Here you go... Miss Nicole helping mama, giving you a bath.

 

This is the first time mama has given you a bath after you have your trach.

Mama, combing your cute little hair...

Here you are... occasionally mad, occassionally enjoying your bath :)

And then... mama posing for Dada after cleaning you up.

Finally.... clean and happy baby so that poh poh will smell a nice smelling baby.

After that.... poh poh and gong gong came.  They started talking to you and you just love listening to them.

Ok... if you are wondering what gong gong was telling you, let me tell you that EVERY TIME gong gong come visit you, he will tell you to get well and come back with us ASAP and that everyone at home is waiting for you to come home and loves you a lot.

Poh poh on the other hand will give you light everytime she comes visit you.

Can you tell how much they love you?

Anyway.... ok... changing topic.... Mama overheard them saying that there could possibly be another baby with CCHS??  WHAT??? Ok... I thought this is rare but to have 2 babies pretty much the same time with CCHS in the same hospital is definitely VERY SPOOKY.  I guess we will know more since I assume that the CCHS mom eventually will meet each other?  If it is... I wonder if the baby is a boy or girl?  I think I heard that the baby is younger than you.... so... you are no longer the youngest??? Man... you didn't hold the title as the Youngest CCHS patient for too long, did you?  LOL... yes... mama can laugh about it now but it is sure not funny when mama found out that you had CCHS.

Leigh, the NP came to talk to mama, asked mama's permission to see if it's ok for the Rhode's family to see you since their baby will have to have a trach soon.  I wonder if that's the family with CCHS or just happen that they needed the trach?  Anyway, yea... no problems at all if they wanted to see you.  I am sad that I didn't get to see an infant with a trach, that way, I can be more prepared but thank goodness for the internet, mama just google and saw it, of course it's different if there is a real life infant but it was good enough.  Actually, Allen in Room 14 had a trach but I know that they did mention that there is a baby that is in a pretty serious condition with trach, that's why they didn't want to show mama.  Poor Allen, he is suffering from some brain issue since his mama's placenta broke when he was 6 months old in the tummy and initially, the doctor thought that he didn't make it but by the time they detected heart beat, he was too long without oxygen in his mama's tummy.  Anyway... back to the trach... yes, mama hated the idea but happy to see that you at least are happier without the mask on and this will be part of you for a while.

Mama know that someday, we will put the pacer in for you so that you no longer will have a trach.  We'll work on a smaller goal which is to only ventilate 12 hours a day, ok?  Then we talk about pacers :)

Aunt Sue, Uncle Thomas, Ella and Liam also came to visit you.  Thank goodness the receptionist was nice enough to let Aunt Sue take a peek at you, if not, poor them, came all the way from Mansfield but didn't get to see you.  They brought you a little gift, books so that mama can read to you.  Thank you Aunt Sue!

Since dada didn't get to hold you yesterday, it was his turn to hold you today....

Finally... it was time to go home, it was time for us to go home, we waited till you fell asleep... good night sweet baby.

Today is a good day, hopefully we'll have many good days going forward.

Mama came to visit you a little later this evening because we just had a bunch of stock in from Baby Love.  Also, Yee Ma will move over to our house for a couple of weeks so that she can renovate her house.  She's putting wood floor all over the downstairs, repainting the walls and ordered custom cabinets for her office, spending at lot of money on all her projects.  So, mama had to clean up some areas to accommodate everyone.

After we were done packing, it suddenly seem like it's going to rain and the wind was super strong, so, I suggested to your dada to play the kite that he bought for 4 of you, yes, dada bought a small kite for you too and 3 others for Big Koko, Meng and Yee Ko.

Check it out, first time koko flying the kite.

Minutes later... ohh noo.....

Yes... the kite got stuck in the tree, thank goodness we were able to get it down, if not, there goes that kite.

Anyway, Miss Shelley came to see Carter and wanted to visit you too, so, I added her on the list of people that can come visit.  When the receptionist ask, what's the relationship?  I just told Dada to tell her that she's your God Mother.  She is like your god mother... I guess we are related by mutation, that's what she always say :)  Anyway... she was funny, she said that the nurse probably has never met me, so, when she was there, the nurse asked, are you Mom?  She said... he's Asian, I am Caucasian, MOM????  Hmm.... they laughed and when she told me, I was laughing hard too.  Anyway... Miss Shelley called, telling me that she spent so much time with you and you had lots of fun with her.  She also told me that she told you what you cannot do to scare mama... hopefully you will remember that.

Anyway, we called the nurse in the morning and one of the reading was 35??  YAY, happy to hear that and most importantly, it's soft.  Glad your tummy is feeling better.  I just hope it's exactly what Gail said that her son had, which is the Entercolitis and after a few days of IV and Antibotics, he was well and the same goes to you.  Please...

We asked the nurse how is your Ultrasound for the abdomen, they said that it looks good, which is hopefully a good indication that you don't have Neuroblastoma.  I read that and it's basically a tumor, which if it's a serious one needs chemo?  Ok... mama is not ready for that, ok?

Mama got to hold you again, FINALLY.... I was not able to hold you for over a week, before, it was because you just had the trach and was sedated and then after that, you had the belly issues.  Mama miss holding you and finally... yesterday, mama got to hold you for the first time with your trach - 7/7/2012.

You were so happy and comfortable in mama's arm, you fell asleep in no time.

Then, poh poh and gong gong came, so, mama decided to prop you up and let you sit, say CHEESE.....

You were just tired after playing with Miss Shelley and then mama.

Then.....

Nite nite... sweet baby boy.... sound asleep in mama's arm.

Mama went down for dinner after talking to Miss Jennette.  I was explaining to her what I know about CCHS, since it is not common at all.  When mama got down, mama saw dada sitting with your 2 brothers... not looking happy at all... apparently, big koko dropped his ipad several times that night...  he was really mad.  Oh well.... it's just an ipad... nothing compares to the happy moment mama had with you today :)

We are taking some steps back.... but we will keep hoping for the best

Mama is still very worried about you.  Your tummy seems to be a little softer but it is still huge.  They have been taking KUB daily to check on your tummy.  Apparently, Elisha, the nurse practitioner said that it is getting smaller compared to on Tuesday.  She showed me the X-ray, err... to me, they look the same.

You were more awake today when we got here but Miss Nicole put you back on Fentanyl because you were fussy.  I guess you hated the repogal tube through your mouth, I can see that you are gagging and I cannot imagine how uncomfortable it is.   The repogal is to help extract air or anything out of your tummy to hopefully help make your tummy softer and smaller.

You were constantly crying and being really fussy, even though I asked Miss Nicole if I could carry you but she said that since you were fussy, we will wait till you were given Fentanyl so that you will be more comfortable to be held.

I guess after being there for a while, you were a bit happier.  Dada started singing to you and you seem a little happier, I guess the Fentanyl kicked it as well.

Check out my happy baby.... your tummy was finally a little smaller than before, still big, 39 cm, but I will take that compared to 44, 2 days ago.

The NP came by and said that he looks like he is starting to smile, I looked at him and I said... err... I don't think he has for me... now when I look back at your picture, I do notice that you seem to be smiling at mama... aww.... cute baby :)

Honestly, I still remember a couple of days ago, mama said that we were on track, on the way home... I guess I said too soon.  Should have just kept my mouth shut.  I guess that's your style, you take steps forward but you also take steps back.  It's ok... I was joking to the receptionist, saying that you love the attention and treatment here.  Also, you love the downtown view.... living in Frisco, you won't get anything like that :)

Here you go, another beautiful picture of you.  You definitely look much better, not as puffy.

Though, you seem to put on a lot of weight... 10 lbs 13 oz but we think it's just the water retention you had.  Also... YAY for mama, they took out the catheter.  I was afraid that we had to deal with another issue with you not pee peeing.  Though, I am happy that the doctor and NP took mama's suggestion seriously.  The reason is because I did a lot of reading and was concern about you having Neuroblastoma, according to the article, 20/29 and 20/33 have high chance of getting neuroblastoma, I asked Miss Shelley if she knows of anyone, she said just 1, Ty.  I know it's rare but I am not taking chances.  Dr. Becky Ennis ordered the Abdomen Ultrasound, which we will get results tomorrow and they also did the chest X-ray and ordered the urine test. 

On our way back home, your Ah Foo sent us a picture of what he did to your koko.  Isn't it funny? :)

Good night sweet baby!

Baby's First July 4th - Another rough day.

My sweet baby boy, this is your first July 4th!!!  Unlike your brothers, you spend your 1st July 4th in the hospital, probably not feeling too good.  Though, we managed to see the fireworks from your room's window.

Anyway, thanks to Yee Ma, she gave us a sushi treat in the afternoon.  After that, we rushed to the hospital, trying to be there for you when they wheel you in the OR.  They lost your only IV line.  If you didn't have your big belly, we wouldn't have need it but because they were very concern about your huge belly, they made sure you do not have food going into the tummy.  So, they called to get a phone consent to do the PICC line.  By the time I got to the hospital, I missed you by 5 minutes.

We were waiting for you down at the lower level.  Both your koko were having fun, dancing to the "Power Ranger" song.  Shelley messaged mama, telling mama that Miss Brandy is up in the PICU.  Miss Brandy is Landon's mom.  Landon is the other CCHS kid in Dallas.  He is about 6.5 years old and he is a NPARM.  Brandy and I texted back and forth and we ended up meeting each other and talking about Landon at the cafeteria.  Landon has a brother, Carter that is pretty critical in the PICU now suffering from Spinal Muscular Atrophy (SMA).  I keep saying that my life sucks but I cannot imagine being Brandy.  Landon is trach and Carter has to be trach too.  It will just be too much for a mom to handle, that's what I think.  Anyway, she was telling me about what Landon had to go through and that's what I am worrying too, about the Hirschsprungs, if they even caught everything or what ever you are having is just Entercolitis.  Sigh.. it's really a lot for me to process.

I thought we were on track and heading home really soon but we are taking some steps back again.  Anyway, I still remember the previous PICC took about an hour but we went into 2 hours and still no signs of you.  Finally, 2.5 hours later, the nurse called, we went up and headed your way, the nurse told us to wait in the waiting room.  Hmm... that's not good is what I thought.  I remember your neighbor, Room 12 came back from the surgery the same day you had your trach, they had complications and that's when they told the mom to sit outside to wait.  I was worried, not sure what's happening.  Came back and they told me that they were not successful with the PICC.  I look at your poor little arms, they poked every where... poor baby and since they were not successful, they had to do a central line in the groins. 

When we were finally told to come back, I knew that you were not stable.  The NP, several nurses, RT were all outside your room.  Saw the readings on the machine, O2 of 70, RR of 45, hmm... not good.  I could sense that they didn't really want me to hear the gas, your ph was about 6.45, Co2 was over 130, other readings didn't show up, they didn't know why, so, they immediately did another gas and the same thing. They even tried a different machine, thinking that it's the machine but it's your reading.  We were all very worried.

You didn't look good :( 

We waited and finally, you open your eyes a little.  Yes, your eyes were puffy. 

20 minutes later.... they did another gas, the NP and nurses were all surprised.  They were joking, saying that you were afraid of the Oscilator ventilator.  That probably gave you a scare and you did not want to be on that vent.  Apparently, you wouldn't like that vent, it is loud, because our neighbor, room 10 has that on 24/7 and Miss Angela said that the regular ventilator just give you pressure but this one would take the pressure off too.  That will make sure that the CO2 comes down really quickly.  Your gas came back with a ph of 7.42 and CO2 of 36, which is perfect, so, they wean the rate down from 50 to 45.  Did another gas an hour later and CO2 was 20??? Hmm... too low this time.

Miss Angela loves you a lot, she made sure that the tapes on you were comfortable, some nurse actually taped your boy part really badly and obviously not comfortable since you had the catheter.  She cleaned you up, made sure you are a happy and comfy boy.  There she is... helping you.

Angela said that we'll put on some clothes for you and turn off the heat, so, I managed to grab the Baby's 1st July 4th shirt for you.  Even though you look puffy, you look cute in it.

There you go, Miss Angela helping you again with your shirt.

 

You finally slept after all the hoo hah for the day.

Happy July 4th sweet baby boy!

When it rains... it pours - Hit and Run accident???

The saying is so true, when it rains, it pours.  So, mama and dada were so worried about your tummy issue yesterday and left late.  We typically leave earlier but we had to make sure that your temp is fine, etc before we left.

We were driving the White Altima, the loaner since our GTR's transmission is dead.  Yes... it's dead and we only have 16K miles on that 3 year old car.  We hardly use that car, that car was used by mama to fetch your Yee Ko to see the doctor when he was in mama's tummy and also to send you to the doctor while you were in mama's tummy.  Mama hardly drove the car over 80 mph.  I still remember someone asking mama, how fast have you driven this thing???  I said never over 100?? Of course, I care about my insurance and accidents.

Anyway, we were passing through Addison and all of the sudden, we saw all the car stopped, so, we slowed down and passed by a White G35 because that car just hit another truck and a few seconds later, we head a loud tires skidding sound and before we know it... BANG..... and we felt the impact.

CJ got down to check on the car, then saw that we still can move, so, CJ told the Red Honda who hit us to pull over, because we didn't want to block all the lanes.  We move the car to the side and all of the sudden, we heard that the girl just spun off and left.  I started feeling nauseated and felt like throwing up.  I walk to the side and 2 people were very nice asking us if we needed help.  I told CJ to quickly go get the girl since this is not our car and we need her to pay for what she did.

CJ managed to get her plates, DN7 L534.  It's a new Red Honda Accord.

 Here is the damage on the loaner.

I wasn't feeling well after we got hit, I got down the car and felt nauseated and threw up a few times.  The paramedics came, checked my oxygen and blood pressure, it seems to be ok but since I just had a c-section, they asked me to go to the hospital.  Heck no.... I don't want to waste 4-5 hours of my beauty sleep because I don't think anything serious happened to me. 

So... dad came to pick us up and by the time we got back home, it was almost 3am... what a day!!!! I was already worrying about you, not having pee pee for hours and concern about your huge belly, now this????

Enterocolitis... Hmm.... What??? Not another issue?

Ok.... first, we had to deal with your tummy issue, apparently you have Hirschsprungs, we had the surgery and we thought we were done with it.

Then... they said you have CCHS, ok... mama took it in as well and now... what? Enterocolitis associated with Hirschsprungs?  Apparently it's common with pull throughs?

Ok... I thought it was an interesting day already since we had a trach change by ENT, trach care by mama and now your tummy is extended?  It was up to 41 and some rashes started too.

Mama is beginning to get really worried about you because the surgeon said that some infants can die from Enterocolitis.  Sigh... it's really a roller coaster ride, we thought that we are on track, on the way home and now again another issue?

I just checked your temp and it reads 99.9, which means you have low grade fever :(  They did a blood couture, blood gas and getting a urine sample from you, which you haven't had any in several hours, I guess you didn't have liquid till later this evening, so, not much pee pee?  Poor baby.  This is what they had you in.

And here you go, the Irrigation that was ordered for every 4 hours and NPO, just with clear liquids until they think your tummy is better.

There you are, Dada telling you to feel better and get well soon.

Here is my little hero, the FIGHTER... still going strong... I love you sweet baby boy!

The doctors were still very concern with your big belly, so, the X-ray team were called every 2 hours to check on you. 

Here you go, the X-ray team taking pictures of you, they said you like it on your side, it was so cute, it seems like you were looking at mama and dada waving at you.

And dada managed to snap a picture of you before they lay you on your back again... yes.. your belly was HUGE!!!

We left at about 12.30am because we wanted to make sure that you are ok.  Not happy with the measurements, it was 41.  Good night sweet baby.

First trach change by ENT & First Trach Care by Mama & Dada- 07/03/2012

Miss Erica called yesterday asking us to come in to work with her on the trach change.  I thought they were going to let us watch your first trach change but I guess it's not.  They already change the trach at 6.30am, so, we were actually here for the trach care teaching.  Miss Shelley came too and she met Dada for the first time.  She again made sure that mama is comfortable with everything.

Anyway, she told mama that when she was 19, she always wanted to adopt an Asian baby but after she had Zoe and since she has CCHS, she decided not to and now, she has you.  She's exactly like your mama, you are one lucky boy, baby Laynson.

We sat with Miss Erica for about an hour learning more about the trach and how to manage and clean it.  It's not too bad, after that, we had to do hands on with you... not the baby doll anymore.  Hmm... when it came to you, it's different because I was afraid that I was going to hurt you or make you uncomfortable.  Of course, you desat.... I guess Dada was pushing the trach too in, causing you to choke and cough and desat?  After that, it was ok but the part that is gross to me is cleaning the hole.  It's just a little too much for me but I managed to just quickly clean it and be done with it.

Your ties were a little too long, so, Miss Erica and Lisa (Our favorite RT) were trying to fix your tie.

Look at you, trying to tell mama... Please... they are suffocating me.

Mama... please help.

Ok... are you guys done?  This is taking too long.